Empowering Caregivers-Spotlight-NINA aka AtoDisciple

My husband lost one of his legs in a "Motorcycle vs. car" accident when he was 21 years old. I was working in the VA hospital when we met through a mutual friend. The meeting changed my life, as Louis and I were married about a year later (July 21, 1960) after he was well enough to leave the hospital and go to work.

My family learned to love him, although it took them a little longer to realize that we could have a good life together as they didn't know the "real person" in him that I did.

Our only daughter was born in June 1962. I returned to work when she was 6 weeks old and worked in various typing positions until I returned to school at the age of 40 to get a two-year degree in accounting which enabled me to get a position at Sun Oil. Louis also worked throughout the years at various jobs until he got a good position as a Quality Control Inspector at Otis Engineering. When a cutback caused him to leave, he then used his retirement money to purchase a dump truck and have it specially fitted for his use. He retired from this business in 1992.

The Lord has blessed us in that we have been able to live normal lives for the past 40 years. The VA had an artificial leg built for him. Over the years people have been very generous on a one-to-one basis when they saw his obvious handicap, and we willingly accepted whatever help was offered.

I have learned many lessons by doing my share in this marriage. I helped with many things that Louis couldn't do, such as carrying things from the car, moving furniture, etc. However, he has done so much to meet me halfway, such as loading the dishwasher, rolling around in a wheelchair to mop the floor, etc. Like all marriages, ours certainly isn't perfect and we have disagreed a lot over the years, but the one thing I have learned is that we could "agree to disagree." I am using that lesson as well as many new ones now that I'm a full-time caregiver.

Louis, who had already been diagnosed as a diabetic and had shown symptoms of emphysema, was hospitalized with congestive heart failure and pneumonia in March 1999. At the end of the first month, he was told that he needed triple bypass surgery. However, his surgeon discouraged him from having the procedure. He was on a ventilator and was told by the heart surgeon that he may make it through the surgery but his recovery was doubtful due to a weakened heart, diabetes, and the ever-present emphysema. Another important consideration was one missing leg and the other one damaged. He could not move himself about even in bed without using his arms. After having spent his first month in hospital, none of the doctors could offer any hope that the surgery could take him off the ventilator and he rejected the surgery. He just wanted to come home! I believed Louis to be quite capable mentally of making his own medical decisions, so I reassured him that I would support whatever decision he made. He was transferred by ambulance to Lifecare of Dallas, a rehabilitation hospital for the second month of his hospital stay. God did intervene, for Louis did manage to get off the ventilator after working with some outstanding physical and respiratory therapists.

If I had not had a long-time, deep abiding faith in God, I would have been devastated. The Stephen Ministers from my church came to the hospital regularly. So many of our friends and church associates also prayed for us and offered to help in any way they could.

After two months of running to and from the hospital and spending many nights there as well, I knew life would be quite different once Louis came home. I quickly learned that two personalities do not fit together easily when thrown together on a 24-hour a day basis, not even after 39 years of marriage. I was "climbing the walls" by the end of September, and even found myself taking it out on my husband who had been so ill. I had read books, searched the internet, and tried to learn as much as possible so I could cook an impossibly healthy diet. I tried not only to make him eat that diet but also to exercise (yes, even in a wheelchair). I wouldn't even let him pick up anything heavier than the Sunday newspaper. I had read that even though it was not possible for him to return to a normal lifestyle, it was possible for him to get better and live longer if he adapted to what I was trying to force him into. He had now become my full-time job, and here I was making us totally miserable. He was too ill to attempt all of these things, and I was beginning to resent it.

In early September I found the Empowering Caregivers chatroom. Some online friends began allowing me to vent via e-mail and they in turn related some of their similar experiences and how they had dealt with them. I also talked with Louis' doctor, who agreed that even though it would help if Louis would follow my wishes, the improvement would not be enough for us to destroy our sanity over. I considered getting a second opinion but my husband disagreed. I then insisted that he join me in a class on Congestive Heart Failure. It was only two classes of 1-1/2 hours each. Both the teacher and the literature were in agreement with what the doctor had told me. Gradually I learned, and then I accepted. I can only help to the extent that he will allow me to, and being controlling, or nagging will only drive us both crazy. I know now I am not in charge of my husband's health. That is up to God, my husband, and his doctors.

We have a different lifestyle now. I am at home full time to care for him, and we have made improvements to enable him easier access ability in his electric cart. The contractor who did the work was a friend of Louis' and volunteered to do the work at a fourth of the cost. I am eternally grateful for all of the hours that man worked. He also stayed with Louis upon our arrival home from the hospital, working on the improvements while I ran my errands.

After my online friends helped me wade through my resentment (staying at home so as to be able to stay with Louis), I then learned about being encouraging. I found I can encourage him! I am still in the process of learning how. Both PGstclair1 and Scerenity, whom I "met" in Empowering Caregivers, have been wonderful in reading my "SCREAMING E-MAILS" and encouraging me without being controlling, nagging, or pushy. I hope I can continue to learn ways to encourage Louis in living the life that his health will allow him to live.

God bless each of you as you become better caregivers. I pray that you will find people who will be as helpful as those I have found.